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Study highlights challenges of diagnosing Lyme disease

John Burns wasn’t getting better.

He was diagnosed with Lyme disease six years ago near his home in Albany, N.Y., using a federally approved test. While he was treated with several courses of antibiotics. Seven months later, he was still suffering from crippling fatigue.

Worried he had developed a chronic illness from the tick-borne bacteria, he saw an infectious-disease specialist and received a far different diagnosis: early-stage lung cancer.

“I’m probably the only person in the world who will say he is happy he got Lyme disease,’’ said Burns, 65, a heating, ventilation, and air conditioning technician. “That’s how they found the cancer early.”


Burns’s experience, along with two other cases detailed in a paper published this week in JAMA Internal Medicine (a publication of the Journal of the American Medical Association), highlights the challenges — and dangers — of some Lyme disease diagnoses.

The study documents three cases in which patients’ cancer diagnoses were delayed because it was assumed they had, or still had, Lyme disease.

Federally approved tests don’t always detect Lyme disease, especially early on, and many symptoms of the illness can mimic dozens of other ailments.

John Burns (left) had cancer, not Lyme disease.John Burns

Those challenges have allowed a cottage industry to develop in which health professionals diagnose the disease using unproven tests or their own judgment. Complicating the issue is a fervent debate over whether Lyme disease can be a chronic, active infection.

In the first case detailed in the study, from Massachusetts in 2001, a man was treated with antibiotics for Lyme disease for three years but did not improve. He was later found to have a pituitary tumor that had grown too big to be fully removed.

In the second case, a North Carolina man was diagnosed with chronic Lyme even though he lived in an area where Lyme disease is rare. It was later discovered he had advanced lymphoma, not Lyme; he died in 2013.


“These three cases are the tip of the iceberg,’’ said Dr. Christina Nelson, a medical officer in the Division of Vector-Borne Diseases of the US Centers for Disease Control and Prevention. She found the patients through different routes: One patient wrote to a newspaper about his experience, while another contacted the CDC, as did a doctor.

Nelson said the agency has heard of amyotrophic lateral sclerosis, multiple sclerosis, and lupus being misdiagnosed as Lyme disease.

The tick-borne ailment is among the Northeast’s most insidious public health threats. Deer ticks no bigger than a poppy seed can latch onto people during outdoor activities.

The ticks, while feeding on a host’s blood, can transfer the Lyme bacteria and other disease-causing pathogens. Early Lyme symptoms can mimic those of the flu and, untreated, the disease can cause arthritis, among other ailments.

A course of antibiotics cures most people, but a segment of patients who are diagnosed with Lyme using federally approved and other methods continue to feel ill, with cognitive problems, fatigue, joint pain, and other symptoms.

Many patients and some doctors believe the problems stem from an active infection that must be treated with even more antibiotics. But doctors who are part of the medical establishment, including the CDC, remain unconvinced, and believe some patients never had Lyme to begin with, or, if they did, suffer from a post-infection ailment. They do not recommend prolonged antibiotic treatment.


Burns’s story underscores just how confusing it can be to get at the exact cause of what is ailing patients. While the other two patients in the paper never tested positive for Lyme using federally approved methods, Burns did — and he really had the disease. He started feeling better with antibiotics, but when he went off them, he felt worse.

“I just wasn’t feeling right. It was wearing on me,’’ he said. By January 2009, he had undergone three courses of antibiotics, but there was no permanent improvement in his health.

He eventually went to an infectious-disease specialist for presumed chronic Lyme disease. It turned out his Lyme had been cured, but his ill health came from the cancer.

His doctor, Sarah Elmendorf, of Upstate Infectious Disease Associates in Albany, N.Y., gave him a blood test that found a slightly elevated white blood cell count. A chest X-ray found a tiny mass in his lung.

“I had surgery but didn’t need chemo or radiation,’’ Burns said. “I’m fine now.”

Complicating the matter, he said, was that he also had another tick-borne disease at the same time.

Nelson said the study should not be interpreted to mean that every patient with vague symptoms such as fatigue should be aggressively evaluated for cancer.

Rather, she said, it’s a cautionary tale “not to assume these patients have chronic Lyme disease.”